The Spanish Federation for Rare Diseases (FEDER) has organized the conference 'Towards a Comprehensive European Plan: Spain's involvement with Rare Diseases' in the Congress of Deputies on the occasion of the current Spanish presidency of the Council of the European Union.
Francia Armengol, president of the Congress of Deputies, inaugurated the event and conveyed the commitment of the Lower House to the cause. She was joined by Juan Carrión, president of FEDER and its Foundation, who gave voice to the estimated three million people who live with these pathologies or are in search of a diagnosis in our country. At the same opening, David Sanchez, spokesperson of the International Action Department of FEDER; Daniel de Vicente, from the European Alliance for Rare Diseases(Eurordis); and Isabel Motero, director of FEDER and its Foundation, also took part in the event.
The first block of the day, moderated by David Sanchez, included the intervention of Ana Fernandez Marcos, Director of Patient Advocacy of the Spanish Association Against Cancer(AECC), Juan Yermo, General Director of the National Business Association of the Pharmaceutical Industry (Farmaindustria), and Maria Jose Sanchez, President of the Spanish Association of Orphan and Ultraphan Drug Laboratories. Juan Yermo, CEO of the National Business Association of the Pharmaceutical Industry(Farmaindustria), and María José Sánchez, president of the Spanish Association of Orphan and Ultra-Orphan Drug Laboratories(AELMHU), who gave an overview of these treatments and their status in Spain. Sanchez concluded that the effective participation of patients in all the processes that affect them must be extended and adapted.
The next round table, moderated by Isabel Motero, included representatives from the Ministries of Science and Innovation and Health, thanks to Cristóbal Belda, director of the Carlos III Health Institute, and Carlos Martín Saborido, advisor to the Directorate General for the Common Portfolio of the National Health System and Pharmacy.
On the other hand, FEDER has counted with part of the Spanish MEPs who already support the need for an Action Plan on rare diseases. Specifically, Susana Solís, Izaskun Bilbao, Rosa Estaràs and Kilian Sanchez from Entidades Solidarias took part in the event.
The event was made possible thanks to FEDER's alliance with Eurordis and RPP Group, together with Farmaindustria and Aelmhu, which have supported from the beginning both the project and each cross-cutting action developed within the framework of the Spanish Presidency of the Council of the European Union.